Abstract
BackgroundLiving related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown.Methods/designWe report the protocol of the Providing Resources to Enhance African American Patients’ Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients’ and families’ proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients’ self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor).DiscussionResults from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.Trial registrationClinicalTrials.gov NCT01439516
Highlights
Living related kidney transplantation (LRT) is underutilized, among African Americans
Evidence suggests African Americans are less likely than their White counterparts to be aware of living related kidney transplantation (LRT) as a treatment option, even when they are under the care of a nephrologist [19,20]
An overwhelming majority of the U.S general public reported having favorable attitudes toward financial assistance programs which could help cover indirect costs for living donors, including costs associated with leave from work, with African Americans reporting significantly more favorable attitudes towards some forms of financial assistance when compared to Whites [24]
Summary
Current Treatment Information Date and Place of Initiation of Dialysis Presence of AV* Fistula or AV Graft Presence of Peritoneal Catheter. We designed PREPARED educational interventions to directly address commonly encountered barriers to African American patients and their family members and health care providers in engaging in informed and shared decision-making regarding pursuit of LRT. We designed the PREPARED plus Financial Assistance intervention to enable patients and their families to overcome the significant barrier of monetary concerns in pursuit of LRT. Rigorous study of these interventions will provide health care providers and policy makers with the evidence necessary to endorse the widespread use of similar interventions in a variety of clinical settings if they are effective. HR contributed to the study conception and design, intervention development, study conduct, and drafting and approval of the manuscript.
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